Recommend to this site

I am new to this site, but is the COPD part still alive, I cannot find anything that is very fairly new. I have COPD and asthma, I was diagnosed around 6 years ago.

How do I get to pulmonary rehab? Why should I have to ask? Why isn't it offered to us?

I have had to pack up work early because, I couldn't do my job efficiently, due to walking up and down stairs many times a day, as I managed a retirement development. I had difficulty signing on, I am now on ESA, but for the last 4 weeks. I have applied for PIP, but everyone says you probably won't get it first time around.....Why not? I have worked full time for more than 35 years, now I need some financial help, and rehab help, I have the added worry and stress of having to almost beg for help. It doesn't seem right to me? Does anyone else feel the same as me, or have any practical advice for me.

Thank you in advance

Linda Black

50 Replies

oldestnewest
  • hi welcome to the site yes the copd part is still alive I think as its been the Christmas holiday a lot of members have not been on , I was referred for rehab by my gp it was the respitory nurse that suggested to gp that she do a referral , I would ask your gp . benefit wise a lot of people do get refused first time and do get it a second time round I don't know why I do wonder if its done so people get refused first time they don't bother again , I was refused first time put in again in a few months circumstances hadn't changed every thing was exactly the same and I got it that was when pip was called dla .

  • I think it depends on your GP I was diagnosed in 2006 with COPD I was offered pulmonary rehab and went to it about seven years later I was offered it again and went to it as my breathing was getting worse then when I moved house this year and went to a new GP I was offered it again. I applied for pip last year and was turned down because I was not breathless on the day I went for my assessment I was told by CAB that it was hard to claim pip for COPD I have applied again and I am waiting for the forms to fill in I found a web site called Benefits and work it tells you how to fill the forms in I just take every day as it comes and I try not to let COPD run my life take care

  • good luck bless hope it work out for you this time , I have to admit it was mobility issues for me as had a spinal fusion done , with our breathing its difficult when you have good and bad days and sods law you was having a good day on the assessment day , I think even medical people don't realise one day you can walk to bottom of garden next day you can hardly walk to kitchen and how quick the breathlessness can come on

  • Thanks Mr M.

  • You are so right! It just comes out of nowhere, one minute i think i feel quite good today , ten minutes later i am on the floor gasping for breath. It is mad!!

  • I also found the same website and managed to put in a claim that was successful on appeal. Without the website i do not believe i would have got it. You have given some very good advice.

  • Hello Linda

    It seems to be a fact of life now that if you don't ask you don't get, and sometimes even asking doesn't get you what you want or should get.

    Keep trying.

    You are like many on this site, you have worked all your life and paid into the system, then struggle to get help... l have worked full time for over 50 years and have COPD and Asthma... I can not get my GP to refer me to a specialist.

    You are stressed and angry...rightly so....but for your own health don't let it all overwhelm you.

    You have asked a lot of questions on your post, the BLF can offer you help and advice, you can telephone them 03000 030 555 or helpline@blf.org.uk

    They offer advice on many topics, one of them being benefits and financial help

    Members on here will give you help, support, advice and a few laughs, but a lot are not here due to the holiday period. Keep posting your questions.

    I see you have been given a link to a benifit site by tisBAme, it looks very helpful, well worth a visit.

    Keep positive Linda, l wish you every success getting the help you need.

    Velvet xx

  • Thank you so much for your understanding...50 years, wow, I take my hat off to you. Maybe you should think of changing doctors?. I am just reading my many replies. X

    Happy New Year x

  • You will find plenty of chat about COPD on here, on the right of the screen are Topics, you will see that COPD is listed with 2,031 entries, plenty of reading there for you lol. As has been pointed out to you, your GP or Respiratory Nurse can refer you to PR, believe me I enjoyed doing mine and whilst you wont see massive changes as some people expect even a small improvement is so valuable to us. The other thing is to try and stabilise the problems and I think the exercises can help in that respect. I finished my 12 session course a couple of week ago and I am now looking to continue attending some other form of exercise.

  • Thanks for your reply.

    I love swimming, now that I have been forced to finish work early, I thought I would go......I went once and probably did too much, I was knackered. I love walking but now the weather is changing I don't go so much, so once there is a gap in the pattern, I find it almost impossible to start again. I am so really fed up with my limitations. X

  • Hi there, there are plenty of folk here with COPD and I urge you to become as knowledgable as possible with your condition. It isn't that the NHS doesn't care, rather there are lots of folk with ill health who need to use NHS services.

    Pulmonary Rehab, now you know about it, do ask your GP or Practice Nurse for a referral to your local pulmonary team and they will be able to assess your need.

    ( it is part of the NICE care pathway for COPD)

    Keep well and happy and hope to hear from you again on this site.

    Happy New Year !

  • Welcome Linda, I can't help with the benefits side of things because I still work full-time (for the time being - it's getting more and more difficult). Re Pulmonary Rehab, after reading about it on this site, I asked my GP, who referred me to the Respiratory Team in my local area; they arranged for me to go to Pulmonary Rehab, as well as arranging for the GP to prescribe my rescue meds to have at home for any exacerbations. It seems each area is different, but I love having my Respiratory Team at the end of a phone line - they are SO helpful. Best of luck with everything - as Velvet says, nothing is offered these days, so just keep on asking x

  • Thank you for your reply, but this is partly my annoyance, I too would probably still be working, at a job that I loved, if I had known about PR before I gave my job up in July. It's been a real struggle financially for us.

    I am going to make an appointment and ask to be referred ASAP. Thanks again. X Happy New Year x

  • That is a shame Linda, as your employer should have looked into alternative methods of you carrying out your work, or alternative positions within the company, if either were possible. I'm not sure whether PR would have helped enough to help you stay working at the job you loved - they teach you the exercises and the expectation is that we carry on doing these at home, so it does take a while to see any improvement. However, as it's water under the bridge try not to beat yourself up about it (as that will only make you feel worse). Look into the benefits side of things more closely, and call the BLF Team for any help with that - the Citizens Advice Bureau may also be able to offer some help too. In the meantime, take care and I hope the New Year brings good things for you. x

  • Hi again, I think it may have helped, as the main problem I had was walking up stairs many times per day. As a manager you could not use the lift. If I had breathing techniques it might have helped. I feel it should have been offered by my GP or nurse.

    I will try not dwell on it, but I miss my job.....

  • I don't understand why you had to give up your job because you didn't know about PR. I worked as a cleaner only gave it up because in moved house. How would you knowing about PR made any difference to you keeping or leaving your job.

  • Possibly breathing techniques, I had to use the stairs many times per day? I am only assuming it would or could have made a difference now that I beginning to find things out for myself?

  • Sounds odd you weren't allowed to use the lift which would have helped. Firm not very supportive? Rehab wouldn't have been a magic bullet to improve breathing to enable you to use stairs, would give graduall improvement over time so you don't need to fret about that.

  • Hi snodgrass In case the lift was to brake down the manager can not use the lift

  • Were other people allowed to use the lift or was it only for materials? Confusing!

  • My dad lives in a retirement complex. It is just the manager or her assistants that can not use the lift. Other people can use it.

  • We got off to abd start, because I should have typed my explanation into someone else's comments. Please forgive me, but I am new to all of this.

    I hope that you are as well as you can be.x

    Take care

    Linda

  • Let me put you right. The manager cannot use the lift because, she or he has the master key on them at all times, so if a resident was to become ill and pull their cord and the lift broke down with the manager inside, the manager could help the resident who needed then. X

    Hope you understand x

  • I should have replied to Snodgrass I think? That was the one that asked the question?

    I am new and will learn lol

  • Sounds like you have had the same fun as me. It is a fact that most of the time you will have to ask for most things. PR is always very busy so they do not refer that easily but if you can get a chance to go you will find it a great help. I was referred a second time but they refused me as they state I am exercise intolerant. To make matters worse I do not have COPD but RLD and PH with heart conditions and a few other things thrown in. It seems a lot of Doctors do not fully understand them and the benefit people do not have a clue about them. It took a consultant to take time to watch me get up from a chair and go to a room for a ECG and back again for him to understand what happens to me on mild exercise.

    I also worked for 45 years and when I had my own business, employed 40 people at it's peak so do feel that having to beg for every penny I get does not seem right.

    As for PIP it is important that you do not say on a good day and really look at all the things that you now use to make life easier. I was amazed how many things over the years I now use that I did not need when I was fit.

    Be Well

  • Thanks for your tips regarding PIP on a good day.

    I am afraid I don't know what your conditions are, sorry for my ignorance.

    I seem to just be having more time to read these things and start to find out more things.

    Happy New Year

    Linda

  • Hi Linda, welcome to the site & yes as already said the COPD part is still going strong. I have COPD and was originally diagnosed as COPD/Asthma in 2009. Never got on pulmonary rehab but in 2013 I went to the rehab gym and was given a course on life long lung exercises.I agree with what you have been told about PIP it is more difficult to pass the criteria to get it than the old DLA. If refused any benefits or rehab, question it because in many cases persistence is the only way to get people to accept your disablement. I felt much like you that I had paid into the system so why was I being challenged when I became ill in my later years. Good luck Oh and I went back to work originally but gave up when I eventually could no longer struggle to maintain my employment along with comments from other workers that I was paid to do the same work as them.

  • That's terrible comments from your co workers. Some people have little or no sympathy? Hope none of them were smokers and become ill in latter life xx

  • Linda, the best advice is try the b&w website. It is well worth the few pounds they charge. It makes everything really clear. I spent weeks filling in the forms writing loads and loads. They want as much detail as possible, that is how you get the right amount of points. Good luck with your claim.

  • Hi, thanks for the advice...

    What is the B&M site please.

    My PIP assessment date and time has just arrived. I have to go to Southampton and I live in Portsmouth. ? I get so nervous going out on my own xxHappy New Year Linda

  • It is the benefits and work website. It is really good and so easy to follow. They take you through the forms question by question. If you struggle to go out on your own tell them that as well. You can take a friend for support. I wish you luck with it, let me know how it goes.

  • Type in w.w.w.benefits&work.co.uk.

  • If you get nervous going out I think you can ask for your assessment to be done in your house. I am going to ask if they can come to my house I also need someone to fill in the form because I can't hold a pen in my hand for long as it sticks and gets very painful wish you luck. And welcome to the site I am new as well

  • Welcome Linda! You will find heaps of support and advice here. I have asthma & bronchiectasis but not copd, so probably can't help you much, but there are many kind & wonderful people here who will always help you if they can, even if it's only to listen

  • Welcome to the site Linda. I have COPD and asthma but also have other major health issues. Hope you will find this site useful, you will learn more here than from any doctors! Xx

  • Hi Lyn,

    Yes it seems like I will learn more on here.

    Thank you for the welcome.

    Happy New year to you x

  • Wishing you a happy new year too xx

  • Hi linda1853 I wad diagnosed copd and asthma 3years ago .I am going to see gp about pul rehab as zoon as I can.i claimed pip and was refused first time .I appeLed the.discision and it took 18 monthes for my appeal to be heard. Having go through a lot of.health questions about how i manage on a daily basis I.e mobility .and living all based on points scored plus I was having.a bad time health wise .all went in my favour.IManaged to get the standard rate .so dont give up.keep well.dave

  • Thanks Dave,

    18 months, wow. Did you get it all backdated?

    Happy New Year to you x

  • Hi linda yes took a whileto come through tthough. Dave

  • Hi linda forgot to wish youa happy new year.dave

  • Linda it may seem long and detailed but that is what they want to know. I got it so wrong at first as i thought it was about the illness but it is about how it affects your daily life more than anything. If it takes a long time you do get it backdated.

  • Hi Linda, i also struggled to get help, in fact i have had to fight on every front with this dreadful copd. Even to get my doctors to listen was a fight. I finally got diagnosed then had a year long fight for pip. Now it is finally all sorted out, it is hard to be patient when you need the help but the system is slow. I hope you get what you need.

  • Hi Linda, welcome to to site I think you gp should be able to help you with pip, filling in the forms I live in Australia and we probably have different rules here but they are very strict you have to get 20 points to get assistance finically e,g letters from doctors X-rays etc. my third attempt I got the assistance I needed. Good luck.

    Gallmoe

  • Been for my Assessment today, just have to sit and wait for the results and hopefully for the money.

    Hope you are well yourself, are you in the beautiful sunshine? Isn't it your summer now?

    Linda

  • Good luck Linda, yes Australian Summer at the moment we are on high alert we have been getting torrential rain from Queensland down the coast to Newcastle many people face evacuation so I am watching our river and keeping my fingers crossed. Yes you pay taxes all your working life then you get sick have to retire early bang you need help, it discussed me that the unemployed find it easy to get support unmarried mums and bad backs they take the case everyone with a bad back is on a disabled pension easy I don't know if they have a consenice. Let me know how you get on.

    Gallmoe (Anne)😥

  • Fingers crossed Linda I have to wait till 12th Jan for the CAB to fill in my form for me

  • Hi Amanda2,

    Hope you have had help filling in your form from CAB. I have now had my interview and await the results. The lady who did the interview was a very sympathetic nurse, but she cannot give any indication of my answer. Keeping everything crossed for me, you and anyone else who is trying to get some financial help.

    Take care x

  • Thanks Linda I had help from CAB to fill in my form and waiting to see if I have to go for a assessment. I did do the PIP test on the benefit and work site with the answer on the form and it came up that I would get it fingers crossed and take care

You may also like...